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Researchers feel HIPAA hurts medical studies

HIPAA Weekly Advisor, November 19, 2007

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In a survey of more than 1,500 epidemiologists, two-thirds indicated that they believe HIPAA has made "research more difficult" in a survey commissioned by the Institute of Medicine and published in the November 12 issue of the Journal of the American Medical Association (JAMA), according to a November 13 article by the Associated Press (AP).

The survey in JAMA indicated that one in nine researchers said they had abandoned a research idea because they thought it wouldn't be approved because of HIPAA, and that in general, researchers felt HIPAA made it harder to recruit patients and use their medical records, according to the AP.

The first of its kind, the national survey had weaknesses, said the survey's leader Roberta Ness, MD, of the University of Pittsburgh. 10,000 members of 13 epidemiology societies were solicited by e-mail for the survey, but this meant that respondents may have answered the survey more than once, and those with strong feelings may have been more likely to participate, which may have affected results, says the AP.

HIPAA does make exceptions for certain types of medical research. This includes public health agencies, which can monitor disease outbreaks. Researchers can also use de-identified data or may seek waivers to use health records without patient authorization, according to the AP.

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